Always have data, documents and useful advice at hand to manage primary immune thrombocytopenia (Itp). Thanks to a new digital tool, patients suffering from a rare autoimmune disorder characterized by a reduced number of platelets in the blood can keep track, day after day, of the symptoms of the disease, check the trend of the platelet count – a fundamental aspect because it could be hemorrhage course – but also record the results of the exams to always have them available, save the useful contacts of the care team, organize the calendar of visits and checks and share information with your reference hematologist. All this is now made possible by Itp App, the digital diary for those living with a rare disease that has a highly debilitating impact on the quality of life and that requires constant monitoring of symptoms to achieve the goals of care. Itp App, which can be downloaded for free from the Apple and Android stores, is developed by Novartis, under the patronage of the patient association Aipit Aps Onlus – reads a note from the Swiss pharmaceutical group – and is part of the company’s broader commitment to promoting a greater awareness and empowerment of patients and caregivers who have to live with a complex pathology, such as thrombocytopenia. The ITP, in fact, presents a very different symptomatology from patient to patient, which requires designing a ‘tailor-made’ path to achieve the goals of care. Furthermore, those living with primary immune thrombocytopenia face considerable difficulties not only physically, but also emotionally, as noted by the largest global survey on the real life impact of the ITP, I-WISh. Promoted by Novartis, the survey involved over 1,500 diagnosed patients (over 18) and 472 doctors distributed in 13 countries around the world. The research found that the majority of patients, over 70%, believe that ITP has had a negative impact on energy levels, the ability to exercise, work, focus and carry out daily activities for at least 50 years. % weather. Relapses on an emotional level, as reported by more than half of the patients, and on working life are also noteworthy: a third of patients do not feel productive at work and one in 4 seriously considered the possibility of stopping work. Furthermore, while half of the respondents reported that fatigue was the most serious symptom – followed by thrombosis, depression and anxiety over platelet counts – only 31% of doctors included it as a top symptom in terms of frequency and severity. thus highlighting a discrepancy of priority therapeutic objectives between patient and specialist. “Evaluating the state of health of a patient with Itp cannot be limited to the control of clinical markers or to platelet counts alone – says Monica Carpenedo, Head of Non-Oncological Hematological Diseases at the ‘Operative Unit of Hematology of the Sacco Hospital in Milan – It is essential to understand the impact of the disease on the quality of life Let us not forget that this is a non-tumor pathology, often with a chronic course, which accompanies the patient for a very long time. The dialogue between doctor and patient can be helped by the presence of timely information on the evolution of symptoms, so as to make more effective communication and timely intervention by clinicians. This is why we recommend that you keep track of them regularly and accurately. “The application responds precisely to these needs, allowing you to measure the progress of the disease and quality of life and to keep track of symptoms, also facilitating the patient in preparing for meeting with your doctor. “Itp is an unpredictable disease, which can change a lot from person to person as well as evolve over the years. This means that it is not possible to predict bleeding episodes or try to prevent them – underlines Barbara Lovrencic, president of Aipit Aps Onlus – This is why it is essential to keep track of what happens day after day and thus learn to read the symptoms and how to manage them. . Itp App helps patients in the path of awareness of their disease. “Another tool designed for patients with Itp and caregivers is www.myitplife.it, a reference hub with useful and updated content to experience the disease day by day, and where they find space also for interventions by clinicians and patients. The portal, created by Novartis, is now an even more authoritative and certified source of information on pathology, symptoms and therapies – explains the note – thanks to the ongoing contribution of a new editorial committee consisting of hematologists and pediatricians specialized in ITP, coming from all over Italy. “Novartis is concretely alongside patients and is committed to satisfying their needs – says Paola Coco, Novartis Hematology Medical Director – For this reason we do not limit ourselves to developing innovative therapeutic solutions, but we are committed to improving the quality of life of patients, especially those suffering from rare diseases, with high-quality services added value that go ‘beyond the pill’ “.
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